Dis Breast Cancer Survivors Part II -GAGWTA!

[Feralpeg]

Hi, Ladies! I have a question. I really want your honest opinions. Let me start out by saying that I don't want to insult anyone or minimize anything any of you have been through. I am now a 26 year breast cancer survivor myself.

The other day, I was shopping at Downtown Disney. The CM who waited on my at World of Disney was very nice and we started chatting. In passing, she mentioned that she had moved to Florida six years ago to die. She had lung cancer in both lungs. Her daughter lived here, so she wanted to be here in the end. Her doctors had told her that there was nothing else to be done.

After moving here, she decided to get a part time job at Disney. She didn't want to just lay around waiting for the end. By some miracle, her cancer disappeared. Today, she has no sign of cancer at all. She told me that, as far as she is concerned, she is six years old because that is when life really began for her. Prior to that, she said she worked and existed, but she didn't really notice the beauty in life. Now, she loves her life. She loves working at DTD, meeting and greeting people.

When I left the store, I was so touched by her story. I got to thinking about my life. Prior to my cancer, I went to work each day. I worried about what things I could buy, how I looked and what party I could next attend. After my surgery, my outlook on life changed. For the most part, those things didn't really matter any more. I really wanted something more fulfilling out of life. That is when I decided I would get pregnant as soon as the doctor gave me the okay. I waited five years and then had artificial insemination from an unknown donor. My daughter is now 20 years old and the light of my life.

I can't even imagine what my life would have been like if I had not had cancer. Don't get me wrong, it is a horrible, disfiguring disease, but I don't want to concentrate on that side of it. I know that if I hadn't had cancer, I would have never made the decision to have a child on my own. I was in a relationship that was going nowhere. It would never have worked in the long run. Cancer gave me the shove I needed to take some positive steps in my life.

By now, you are probably asking "where is she going with this?" I am strongly thinking about putting something together showing the positives that come out of having had cancer. In no way, do I plan on minimizing the disease. I just want to show that there is often light at the end of that terrible tunnel.

First, I am wondering what you ladies think of this idea. If the ladies on this thread think it is a terrible idea, than it would most likely not be well accepted by others. I see this group as a good cross-section of ladies who have experienced cancer.

Second, I would love to hear from you on this subject. Do you feel that having had cancer made positive changes in your life? You could PM your responses to me or email me. I would not use any names in my project without your consent.

I'm looking forward to your feedback on this idea.

Thank you!
Peggy

 

[jackskellingtonsgirl]

Hi, Peggy!

What a neat story! I seem to recall reading that you were a BC survivor, but I never knew the story of how Kendall came into your life. Very cool!

I am not really an appropriate one to weigh in on your project because I am not a survivor. My mom is in the middle of treatment now. Certainly if you move forward I would love to share your project with Mom! I think she is a little discouraged right now, and something like that might give her a boost as she enters into her next phase of chemo.

 

[Sha]

I cant off any assistance either Peggy. I'm a daughter and niece of Breast Ca survivors. I am also a nurse. I can say that as a nurse, my clients have helped me see what more is out there in life! And I am very grateful for them to show me that.

I think your idea is wonderful!

 

[snappy]

Anybody want to weigh in on my current family drama? I'll try to keep this short. DD19 is currently in her second year of college. SHe is living at home and attending a community college, her choice. I try to remember that she is an *adult* and let her make her own choices, etc. I'm a little better at it than DH is. We do have house rules, and she follows them, no problems.

Her boyfriend transferred this year to a four year school about an hour away. He now has an apartment off campus. And this is where the problem comes in. She is off tonight to visit him, and will be staying there until Sunday. I'm not thrilled about it, but again, if she went away to college like her sister did, she would have that freedom, and we would be none the wiser. Anyway, DH is most unhappy about it, and not too thrilled with me for *letting* her go.

So, what do you all think? *allow* it, or not?

Once they are "adults" you have to let go. It is hard, especially when they are still financially dependent, but want to be independent in every other way. I actually have come to the place where I believe early relationships are helpful, especially while they are still at home because you are there to pick up the pieces if necessary.

The father/daughter thing is difficult. I know my DH is very protective where our daughters are concerned, much more than with our DS20. Even though we really like DD18"s BF a lot it is very hard to stand back. We try. It is an ongoing effort, but you do the best you can.

Unfortunately, these battles can cause distress in the parents' marriage. We have had many let us say differences in opinion where our kids are concerned.

I used to be way more controlling with our teens. Once I backed up a little, things improved. I finally decided my relationship with them was more important than always knowing exactly what they were doing and who they were with. I have moved on. I try to make myself available when they need help, and I made sure they understand the repercussions of their actions and what they need to do to protect themselves. That is ultimately all you can do.

They have both made mistakes and hopefully have learned from them. So far so good.

It is hard for me too as I was out of my parents' house at age 18. I grew up quick, and did things my way. DD18 is much like me.

 

[snappy]

Hi, Ladies! I have a question. I really want your honest opinions. Let me start out by saying that I don't want to insult anyone or minimize anything any of you have been through. I am now a 26 year breast cancer survivor myself.

The other day, I was shopping at Downtown Disney. The CM who waited on my at World of Disney was very nice and we started chatting. In passing, she mentioned that she had moved to Florida six years ago to die. She had lung cancer in both lungs. Her daughter lived here, so she wanted to be here in the end. Her doctors had told her that there was nothing else to be done.

After moving here, she decided to get a part time job at Disney. She didn't want to just lay around waiting for the end. By some miracle, her cancer disappeared. Today, she has no sign of cancer at all. She told me that, as far as she is concerned, she is six years old because that is when life really began for her. Prior to that, she said she worked and existed, but she didn't really notice the beauty in life. Now, she loves her life. She loves working at DTD, meeting and greeting people.

When I left the store, I was so touched by her story. I got to thinking about my life. Prior to my cancer, I went to work each day. I worried about what things I could buy, how I looked and what party I could next attend. After my surgery, my outlook on life changed. For the most part, those things didn't really matter any more. I really wanted something more fulfilling out of life. That is when I decided I would get pregnant as soon as the doctor gave me the okay. I waited five years and then had artificial insemination from an unknown donor. My daughter is now 20 years old and the light of my life.

I can't even imagine what my life would have been like if I had not had cancer. Don't get me wrong, it is a horrible, disfiguring disease, but I don't want to concentrate on that side of it. I know that if I hadn't had cancer, I would have never made the decision to have a child on my own. I was in a relationship that was going nowhere. It would never have worked in the long run. Cancer gave me the shove I needed to take some positive steps in my life.

By now, you are probably asking "where is she going with this?" I am strongly thinking about putting something together showing the positives that come out of having had cancer. In no way, do I plan on minimizing the disease. I just want to show that there is often light at the end of that terrible tunnel.

First, I am wondering what you ladies think of this idea. If the ladies on this thread think it is a terrible idea, than it would most likely not be well accepted by others. I see this group as a good cross-section of ladies who have experienced cancer.

Second, I would love to hear from you on this subject. Do you feel that having had cancer made positive changes in your life? You could PM your responses to me or email me. I would not use any names in my project without your consent.

I'm looking forward to your feedback on this idea.

Thank you!
Peggy

Peggy, I think your idea is excellent. I have to agree with you that although I would not choose to have cancer, it has had positive ramifications. I believe cancer has brought my husband and me closer, second only to having our last child born in our ripe old age.

As I am aging, I find the positives of cancer even more apparent. Being a healthy survivor is more important to me than my aging face and body. I am not the activist type but I enjoy the whole survivor concept.

I will say that I am not where I would like to be in relation to talking about cancer with my children. It is still a taboo subject, and I resent that fact. It is the one downside remaining for me.

Let me know if there is anything I can contribute or do to support your effort.

Laurie

 

[CherylDan]

Peg...your story is very heartwarming, and I think your project sounds like a great idea! Hell....cancer sucks. When good things come about as a result, it makes it suck a little less!

Thanks guys for offering up your opinions about my DD. Truth be told, I'm fine with it, not thrilled, but fine - so long as they are RESPONSIBLE! But my poor DH, he is just having a heck of a time dealing with his "baby" being all grown up. He's trying, he just isn't quite there yet, and I think the whole weekend thing just sort of pushed him a bit more than he was ready for. I also used to be way more controlling, but that all changed after my diagonosis during her senior year of high school. I very quickly learned what was and what wasn't worth stressing over. I think my sudden more relaxed attitude of dealing with teen issues kinda threw him for a loop for awhile, but for the most part we are on the same page.

I hope everybody is having a good weekend! GAGWTA!!

 

[Feralpeg]

Thank you all for your feedback. Over the next couple of weeks, I will put together a little questionnaire and post it. If you are interested, I'd love to have you respond. I haven't decide quite how I am going to present it all at this time. I've thought about a book, or even a short film. I'm pretty involved in the independent film industry in Florida so that is a possibility. Anyway, I am so happy that you feel there is merit to my idea.

 

[NHAnn]

Hello Peg, nice to see you here! Count me in as another who thinks you have a good idea . We have, from time to time on this thread, discussed the good/positive aspects of our cancer experiences...be they major life altering things (like your story of your DD) or just little day-brightening things like stopping to truly enjoy a beautiful sunset or appreciating a child's bouquet of dandelions. It can be hard to recognize while in the grip of fear and physical toll of treatment, but there are so many "gifts" .

Cheryl....I too think you are fine in "allowing" your DD visit the BF....maybe a chat with her that the letting go can be hard for parents and for some dads with DDs in particular....and it sure never hurts IMHO to revisit safety/precaution issues in a supportive way.

Happy weekend to all!!
GAGWTA!

 

[MerryPoppins]

Hi Peg. Good to see you here. I think your idea is a great one. I like to think that the things that my breast cancer brought to me are like silver linings in storm clouds. I certainly didn't want cancer and wouldn't wish to have it again. But it did bring some positive things to my life. I do look at the world differently than I did before. I think it's partly because it causes you to face mortality. Then when you continue to live, life seems much sweeter.

Cheryl, I think you're right. If your DD was away from home, she would be doing things without your permission. I think a talk might be in order about safety and taking chances about pregnancy, but I think the time comes when you have to accept her decisions. I was never in that spot with DS, since he moved out when he started college. But I think it's even more difficult with our girls, even if that isn't right. I'd probably have more trouble letting go with my DD. I'll be thinking of you.

 

[snappy]

things like stopping to truly enjoy a beautiful sunset or appreciating a child's bouquet of dandelions.

Beautifully said!!

 

[snappy]

I think it's partly because it causes you to face mortality. Then when you continue to live, life seems much sweeter.

You nailed it, Merry.

Can't get any better than life being sweeter.

Love it.

 

[Pea-n-Me]

Hi Peggy. I know you stopped by at the beginning of the first thread. I knew you were a long term survivor and I knew about your daughter, but I didn't know about the relationship and timeline between the two events. Nice story.

I think having cancer does change your perspective on life in a way that others cannot always relate to. It becomes part of who you are because you live it every day. At the beginning of my experience, I enjoyed reading about others' suvivor experiences and perspectives. I didn't like it, though, when non-survivors would say things to me if I felt they were doing it to placate me. (Maybe that's what you meant when you mentioned minimizing the experience?) I guess I was too worried about dying and did feel like my emotions were wrapped around that - I had to come to appreciate it on my own, over time. If that makes sense. I really love connecting with other survivors who walk the walk so to speak because I know they live it too.

The thing I can't help thinking is, "what about those who don't make it?" (like our Beth/MinnieM3.) I almost think a qualifier has to go along with it, like "yes, this will be great someday, as long as it doesn't kill you." I know I've met other survivors who absolutely hated cancer and couldn't see any positives in having had it. I'd say the majority, though, who survive it, can see the positives it's brought. I wish I never had it, as I feel it's caused me more heartache and worry than just about anything else in my life ever has, to this day. But I do believe it was somehow in my Master Plan and that I was meant to learn from it, and it absolutely has changed my life in many ways, most for the better.

 

[lookingforward]

Hi Peggy. I know you stopped by at the beginning of the first thread. I knew you were a long term survivor and I knew about your daughter, but I didn't know about the relationship and timeline between the two events. Nice story.

I think having cancer does change your perspective on life in a way that others cannot always relate to. It becomes part of who you are because you live it every day. At the beginning of my experience, I enjoyed reading about others' suvivor experiences and perspectives. I didn't like it, though, when non-survivors would say things to me if I felt they were doing it to placate me. (Maybe that's what you meant when you mentioned minimizing the experience?) I guess I was too worried about dying and did feel like my emotions were wrapped around that - I had to come to appreciate it on my own, over time. If that makes sense. I really love connecting with other survivors who walk the walk so to speak because I know they live it too.

The thing I can't help thinking is, "what about those who don't make it?" (like our Beth/MinnieM3.) I almost think a qualifier has to go along with it, like "yes, this will be great someday, as long as it doesn't kill you." I know I've met other survivors who absolutely hated cancer and couldn't see any positives in having had it. I'd say the majority, though, who survive it, can see the positives it's brought. I wish I never had it, as I feel it's caused me more heartache and worry than just about anything else in my life ever has, to this day. But I do believe it was somehow in my Master Plan and that I was meant to learn from it, and it absolutely has changed my life in many ways, most for the better.

You said it perfectly for me. I HATE that I had cancer. I HATE that people who have never had cancer tell me annoying things like "think positive" or "eat broccolli", etc. Not that any of that is bad, but really! Or they blame cancer patients...like "My cousin got breast cancer but she was overweight". Okay.

And I agree too that there are so many who die from the disease. One of my dearest friends died from BC and I don't think she or her family would find a positive in that. However, meeting certain people through my "journey" (I hate when people call it that....like its a vacation! ) has been a bonus, etc. Thats how I see it. I cherish the new friendships and connections. But I would still choose to never go down this road because the negatives are more than the positives. But I don't have that choice, do I?

So I will continue to eat my broccolli while I repeat positive affirmations as I skip down my cancer journey! KIDDING!

I do appreciate and LOVE that we as people can survive treatment and support each other. That has made it livable for me.

 

[Pea-n-Me]

Cheryl, I sympathize. I can't answer having never been in that situation myself (though I'm glad I'll have all of you around in about 7 years. ) It was funny, though, because a coworker told me about a very similar situation the same time you posted. She felt she had to let her daughter go, FWIW. I hope it all works out.

jsg, I agree with Cheryl, that's how it is with chemo. Extreme fatigue, immunity (white blood cells) in the toilet, nausea, etc. It's expected. Hard to live, and hard to watch, but she will come out the other side and God Willing it will do what it's supposed to do - prevent the cancer from spreading distally. Hang in there. As for the other stuff, it's hard to say what's going on. Hopefully in the testing done previously they would have answers, but whatever they need to do, they'll do.

My cousin wrote to me and wants to celebrate our 5 years of survivorship together. She had breast cancer at the same time I did, but had her diagnosis a few months before me. (Both of us had gene testing which was negative.) Very strange calling to tell her I had BC and she was like, "you're not going to believe this, but I have it too!"

A friend called me to tell me her father was just diagnosed with stomach cancer. He had had previous surgery on his stomach, and from what they were told, people who've had surgery on their stomach can often go on to get cancer in the same area. I'd never heard of that, has anyone else?

 

[Pea-n-Me]

You said it perfectly for me. I HATE that I had cancer. I HATE that people who have never had cancer tell me annoying things like "think positive" or "eat broccolli", etc. Not that any of that is bad, but really! Or they blame cancer patients...like "My cousin got breast cancer but she was overweight". Okay.

And I agree too that there are so many who die from the disease. One of my dearest friends died from BC and I don't think she or her family would find a positive in that. However, meeting certain people through my "journey" (I hate when people call it that....like its a vacation! ) has been a bonus, etc. Thats how I see it. I cherish the new friendships and connections. But I would still choose to never go down this road because the negatives are more than the positives. But I don't have that choice, do I?

So I will continue to eat my broccolli while I repeat positive affirmations as I skip down my cancer journey! KIDDING!

I do appreciate and LOVE that we as people can survive treatment and support each other. That has made it livable for me.

LOL, Maureen. And I know. I have this one friend who just insists that she doesn't understand why I worry; that she worries about things "just as much" whenever she gets a pain or whatnot. We actually have had near-arguments about this, including one a couple of weeks ago. The funny (and I guess, ironic) thing is that she is the friend who was most helpful to me during my experience. She actually sat in some of my support classes and came to chemo with me, babysat my children while I was half-dead in the bed after chemo, etc. Yet she insists that anyone can drop dead at any time (and used the situation with my BIL as a "told you so") and everyone has worries about their health, cancer or not. It's a futile argument. Even her husband got mad at her about it one day when she was apparently venting to him about it. He told her, "easy for you to say, you're not the one who's bald and going through this treatment!" I think it's just her personality and "issues" that probably do make her worry more than most people do. I've learned that she's not the "go to" person for me when I'm worried about things myself. (Two weeks ago we were catching up and I made the mistake of mentioning the "hip thing" and we got into it again. )

I think something Laura posted here a few years ago said it best for me (do you still have that, Laura?) I'll say it as best I can remember it. It was posted on another board somewhere by another survivor venting about this very thing. It said something like

I'm tired of hearing "you could walk across the street and get hit by a bus".

Having cancer is more like crossing the highway with 10 buses coming at you.

You said it, sista!

 

[jackskellingtonsgirl]

I think I was lulled into a false sense that Mom was going to get through the A/C infusions without any complications. I think this 4th one just threw her for a loop. Maybe the levels of the drugs in her system finally reached a tipping point of some sort. Which is probably why that combo is 4 doses, huh?

I have spent the whole weekend worrying about her. Worried about all the stuff that is going on now, worried about her starting Taxol, ugh!

Linda - That is sad about your friend's father. I have not heard of a correlation between stomach surgery and cancer.
So are you going to do something with your cousin to mark your 5 years? Sounds like a reason to celebrate to me!

 

[Amy]

Hi Peg. Good to see you here. I think your idea is a great one. I like to think that the things that my breast cancer brought to me are like silver linings in storm clouds. I certainly didn't want cancer and wouldn't wish to have it again. But it did bring some positive things to my life. I do look at the world differently than I did before. I think it's partly because it causes you to face mortality. Then when you continue to live, life seems much sweeter.

I think having cancer does change your perspective on life in a way that others cannot always relate to. It becomes part of who you are because you live it every day. At the beginning of my experience, I enjoyed reading about others' suvivor experiences and perspectives. I didn't like it, though, when non-survivors would say things to me if I felt they were doing it to placate me. (Maybe that's what you meant when you mentioned minimizing the experience?) I guess I was too worried about dying and did feel like my emotions were wrapped around that - I had to come to appreciate it on my own, over time. If that makes sense. I really love connecting with other survivors who walk the walk so to speak because I know they live it too.

MerryPoppins and Linda said it for me (I'm a 6-year survivor). "Minimizing the experience" was the worst thing, and still is to some extent. All the "oh, you'll be fine - I know so-and-so and she sailed thru chemo and radiation" (meanwhile, I'm thinking of someone else who DIED, you know?). Or the people (just a few, thank goodness!) who somehow felt that it was my fault - my own mother said I got breast cancer because I wore underwire bras. (She died 3 years ago from lung cancer, and not once did I tell her that it was because she was a smoker.)

Anyway, even 6 years out, even after all of my follow-up visits and blood work come back perfect, there are MANY people (including my DH) who just don't understand that I'm still living in fear of the return of cancer.

And as for looking at life differently, yes I do. But the rest of the world doesn't, and that's....I can't think of the right word....."difficult" in relationships. "Don't sweat the small stuff" is where I am right now post-cancer, but the rest of the world seems to be tied up fussing over the small stuff. I think facing death makes you look at the big picture and you focus on the important stuff. But most people can't see the forest for the trees (boy, I'm really using a lot of cliches ) and it gets pretty frustrating.

Ok, I think I've rambled enough.

 

[Pea-n-Me]

Or the people (just a few, thank goodness!) who somehow felt that it was my fault - my own mother said I got breast cancer because I wore underwire bras. (She died 3 years ago from lung cancer, and not once did I tell her that it was because she was a smoker.)

That is profound, Amy. And what a special person you are not to say that to your Mom. I know, there's a lot of misinformation out there, some of it based in fact, or theory, I guess. I guess I try to sort out why people are saying things to me. If they're doing it out of genuine caring and concern, then I'm ok with it.

 

[Pea-n-Me]

I think I was lulled into a false sense that Mom was going to get through the A/C infusions without any complications. I think this 4th one just threw her for a loop. Maybe the levels of the drugs in her system finally reached a tipping point of some sort. Which is probably why that combo is 4 doses, huh?

Yes, I think the effect is cumulative. Each dose gets harder, and your body is working harder and harder to re-adjust. Thankfully, it is only 4. The taxol will also add to the cumulative effect, but in sort of a different way. There will be other side effects, often different from those brought on by the AC. As in "bone pain", neuropathies. Also, the fatigue will continue. About 72hrs after my first dose of taxol, I could barely walk for 36hrs. I felt like I was 90 yrs old just going to the bathroom. Awful. But fortunately, that was the worst of it. (I believe the first and third taxols were hardest for me; for some reason, two and four were ok.) You can see why you have to be fairly healthy and strong to get through it. And she will.

So are you going to do something with your cousin to mark your 5 years? Sounds like a reason to celebrate to me!

I think we'll do something with our families together. Probably lunch/dinner and hang out at a park or something, watch them play, they're around the same age.

In fact, when we were in treatment I made my cousin and I matching "rosary/prayer boxes". I placed a picture of us (from just before we started chemo, with hair) together on the outside, and a picture of our 4 children playing together on the inside, as a source of inspiration. I also added rosary beads and prayer cards. My mother had both boxes blessed by our priest. I keep mine by my bedside to this day. My father and her mother were brother/sister.

Our cases were a little different. She had a mastectomy as she had some areas throughout her breast that needed to come out, and her nodes were clean; I had a lumpectomy but had one node positive. She had four doses of chemo, I had eight (thanks to that one node). Hers was hormone receptor positive, so she took tamoxifin, mine was triple negative, so when treatment was over, it was really over for me (which scared me, a lot). We're both doing well. Interestingly, whereas I was a mess emotionally while going through treatment, she was doing fine. In fact, her oncologist assured her "she'd live to be a grandmother" which infuriated me at the time because I was getting no such assurances. But later, about two years after treatment, she crashed emotionally. I think it was cumulative in that she'd had several deaths in her family and had not fully "grieved" her cancer experience. In fact, when I saw her during that experience, I felt awful for her because she was teary and in obvious distress, it reminded me of myself two years earlier. I was glad I got it all over with at once, I guess, though the residual sadness/difficulty coming to terms with my emotions, continued for me for a few years. At any rate, she's good now. I think it just goes to show how different our experiences can be, yet similar.

 

[snappy]

I am so enjoying reading the above posts.

Thanks for sharing your thoughts ladies.

Even though I feel good about myself and where I am, I still feel the weight of what could happen. There are very few people in my life that I feel comfortable telling that too. It is like, once you are out of treatment, it is over so sshhhh, no speaking of it.

Thanks for expressing these deep thoughts. It is very helpful to me.

Laurie

Need to go talk to the tree stump guy before someone else grabs him.